I’m now 18 months Post HSCT for PPMS in Moscow, Russia. What an amazing year and half it’s been. The roller coaster of recovery appears to be settling down, hopefully I didn’t just Jinx myself. The last few months I’ve really noticed an improvement in my walking, gait and balance, but I think that’s because my chemo pain has finally gone away.

Just to recap, I’m PPMS, my EDSS was a 6 pre-HSCT, I’d say it’s now a 5. I was diagnosed with PPMS May, 2012 and was admitted to the hospital in Moscow on August 19, 2013, it was my 47th Birthday. Treatment went very smoothly, and I returned home on September 25, 2013. I had a little set back in June, when I fell and broke my right arm. I’ve not had any infections, and only 1 cold, and that was after 12 months. So, overall, I’ve had a pretty smooth recovery up until now. (Again, I know I’m probably Jinxing myself) I did have extreme chemo pain, that seemed to last much longer than most, 14 months, but once it finally left I’ve felt great. Emotionally recovery is more difficult than I would have imagined, but I’ve pushed through. I was a freak about cleanliness, food, and staying clear of dirt for the first 12 months home. I also have been very focused on physical recovery. I started PT after 1 month home, did that for 6-8 weeks, then started working out at the gym and walking regularly. After the first 12 months of doing that on my own, I began working out with a personal trainer, to see if I could take my recovery to the next level. I’ve continued working with him for the past 6 months. I do still seem to need a nap every day, but hopefully that will improve over time, but I am pushing my body pretty hard right now. I also have some brain fog, and times where my speech seems to hesitate, but this seem worse when I’m tired or stressed. My spasticity has greatly improved, since before HSCT. It is worse on the evenings that I’ve had a hard workout or long bike ride, but still usually manageable with just a couple of magnesium pills. Overall, the results have been better than I every dreamed.

And for anyone that has MS you will be familiar with the timed 25 ft. walk. When I went to the Neurologist for my 6 month post check up my time was 6.2 seconds. At my 12 month check up, it was 5.2. This week we timed it at home, you can see the tape measure on the floor, my time was 4.4 seconds. So, not too bad, even if I do say so myself. I think the chemo pain letting up played a role in my faster speed, I wasn’t in pain.
I’m big on setting goals for myself, one was to ride my bike 10 miles before the end of 2014. Well, I did it!! With a few days to spare. It was cold, but that didn’t slow me down. Considering I was cold intolerant before HSCT, this was even more amazing. It’s been a bit too cold and rainy to ride the past month, so I ride the stationary bike at the gym once a week. As soon as the weather improves I plan on being on my bike again. My new goal is 15 miles by August. Stay Tuned!!

Goal of riding bike 10 miles by end of 2014.

As I mentioned I’ve been working out with a personal trainer for the past 6 months. He started me out very basic, to help with balance and building strength. I go two times a week and we do a High Intensity Interval Training type workout. So, actual workout time is usually 20-25 minutes, then there is warm up and cool down time. So, this really gets the heart pumping. It’s amazing how much this has helped in building strength and improving my balance. This will be something I plan on continuing as long as I can. I love my workout days. Other days, I walk, go to the the gym or ride my bike.

And I can’t leave out my husbands favorite party trick. Me getting up off the floor without crawling to a piece of furniture. Yes, this is a huge deal in our house.

Here are a few videos of what my workouts with the trainer look like.

This video looks silly if you don’t realize I have a resistance band around my waist.

For anyone that might doubt that my EDSS was a 6, here is a copy of my discharge papers from the hospital.
I thought this showed how my toe used to drag when I walked.

The tennis shoes I was wore before HSCT.

The last pair I wore, before the newer ones I wear today.

Yep, HSCT can work for those of us with PPMS too!
Thank you Dr. Fedorenko, and your team, for giving me a chance and hope.
So, that’s it for now. I’ll update again at the two year mark.

VW

Share this:

Like this:

Related

I remember you saying how this treatment only had a 50% chance of working but that was 50% more than you would have had otherwise and look at you now. So very happy for you. You are amazing and you have paved the way for others with MS, giving them new hope. Congrats on your 10 miles!

Fantastic!!!! Congratulation on your 10 miles, and for setting goals! May you
reach all your goals ahead of schedule! Thanks for sharing your story of hope!
All the best and love from Amarillo and Roger & Diane

Wonderful Vicky. My son was treated in Russia 5 months ago. He was EDSS 6.5 when we applied to Russia. He began to worsen considerably in the 6 month wait….considerably. He has been great since coming home & getting stronger. No roller coaster until today ( 4th March). Having spacicity & clonus today….so I expect we are in for a wild ride. You are an inspiration & I send you love & good wishes….wonderful success xxx

Thank you Anne. Tell your son to hang in there, the roller coaster ride and be very wild and scary, buckle up. But, it does get better. I just realized I don’t think I even mentioned spasticity in my update. Mine was pretty bad, and even worse when it was in combo with the chemo joint pain. It’s really improved tremendously in the last few months. I take a couple of magnesium at night and that usually does the trick. Keep fighting!

I’m curious about what all is involved in treatment, where and how expensive it is. I don’t know where I fall on the EDSS scale, but have been completely wheelchair-bound for 3 years and been using a Hoyer lift for toileting for 9 months now.

Hi Maure, You can read what’s involved in my blog. But, basically, they do a physical assessment to make sure your strong enough to handle the treatment. Then they give you shots to stimulate your bone marrow to overproduce and go into your blood stream, then they harvest your stem cells. At that point you begin 4 days of chemo, to reboot your immune system. Then they give you your stem cells back to help you recover from the chemo faster. At this point your immune system is dropping and they put you in to isolation, to protect you from possible infection. This time can vary, I was in for 10 days. Then once out of isolation, they give you a booster of another chemo and steroids, then if all is good you fly home to recover. There is a Face Book group, Hematopoietic Stem Cell Transplant for MS that you might want to look into. Good Luck!

I would start with checking out the Face Book page for HSCT. https://www.facebook.com/groups/149103351840242/ You will find lots of answers there. Are ou still mobile, or confined to a wheelchair? Do you know your EDSS? If > than 6.5 you will have a hard time finding a facility that will treat you.

Crystal, HSCT is available at Northwestern University, in Chicago. They are conducting the clinical trial, but will treat people off trial if approved. They only will treat RRMS, not SP or PP. You can find some talks about it from Dr. Richard Burt on YouTube.